Comments for Epilepsy Talk

Comment on 12 Epilepsy Travel Tips by Travis

Travis — Wed, 30 May 2012 17:02:11 +0000

Traveling with medical bag is an option. It all depends on how long you will be gone and what you need for medications/medical devices. I’d say it doesn’t hurt. This can also apply if you need a CPAP or other medical devices at your destination.

I refilled at about 20 days. The waiver is something that patients can use; at least on Medicare in my case. I explained I was going to be out of state for 30 days, so that likely helped.

I’m guessing the person who paid for my flight (mom) let it spill when she wanted to hold the ticket for use later rather then allow the ticket to be wasted. Medical at times CAN be used to keep the credit as long as the problem is before the flight…least thats what American Airlines said.

Comment on A Caregiver’s Guide to Survival… by Phylis Feiner Johnson

Phylis Feiner Johnson — Wed, 30 May 2012 16:59:06 +0000

You might try The Caring Bridge http://supportplanner.caringbridge.org/

The National Volunteer Caregiving Network
http://www.fianationalnetwork.org/index.php/what-is-nvcn

HealthCare.gov
http://www.healthcare.gov/using-insurance/low-cost-care/index.html

Autism Organizations — A Listing of Autism Foundations, Organizations, and Treatment Centers
http://www.autismkey.com/autism-organizations/

The Autism Society — to find autism services in your state
http://asa.pub30.convio.net/get-involved/state-resources/

Best of luck to you!

Comment on A Caregiver’s Guide to Survival… by Rose Marie Thees

Rose Marie Thees — Wed, 30 May 2012 15:44:41 +0000

We are grandparents raising our 12 year old autistic grandson who has epilepsy and numerous other health issues. The mother has not seen him in 5 yrs and father does not help either. My other two children do not help us out much even if we ask. We do have home health aides for 4 hours a night and two over nights. It is not enough. The grandson does not sleep, so we average 3 hours of sleep a night. The insurance will not approve more hours. We are exhusted. We have not extra monies to hire anyone. Any suggestions?

Comment on A Caregiver’s Guide to Survival… by Phylis Feiner Johnson

Phylis Feiner Johnson — Wed, 30 May 2012 13:55:32 +0000

Quite simply, where would those in need be without caretakers. Nurses’ aides? A nursing home? Nightmare.

When my cousin found out he was going to have his second leg cut off, he told his wife (one of the most wonderful people in the world), that he couldn’t go home like this. And he wouldn’t, couldn’t live in a nursing home.

Fortunately, or unfortunately, that decision was made for him. He died several days after having his second leg removed.

Comment on A Caregiver’s Guide to Survival… by Phylis Feiner Johnson

Phylis Feiner Johnson — Wed, 30 May 2012 13:49:32 +0000

Three cheers for Toni! Always there…always loving!

Comment on 12 Epilepsy Travel Tips by Phylis Feiner Johnson

Phylis Feiner Johnson — Wed, 30 May 2012 13:47:28 +0000

Well, you sure took the bull by the horns!

Comment on A Caregiver’s Guide to Survival… by Charlie

Charlie — Wed, 30 May 2012 02:03:10 +0000

I agree wholeheartedly. A Special Thanks to all caregivers!

Comment on A Caregiver’s Guide to Survival… by Gerrie

Gerrie — Wed, 30 May 2012 00:41:51 +0000

Charlie,
Imagine ALWAYS being there, to GIVE CARE FOR THE OTHER”.
It has to be a daunting task.

Charlie,
I never knew what kind of heart would it take, to just simply being there to care for the other, EVERY DAY in & out.
But, thanks to Epilepsy, I’ve come to LEARN, UNDERSTAND, RESPECT, APPRECIATE, ADMIRE & WORSHIP, watching CAREGIVERS giving a whole lot more & ask in return, for nothing more than the well-being of their fellow human being.

Patients may take CAREGIVERS for granted, but NOT TOO MANY “PRESTIGIOUS PROFESSIONS” IN THE WORLD, CAN COME CLOSE TO FIT THE SHOES OF CAREGIVERS.

While many of us put aside our CAREGIVERS PRECIOUS contribution to our well-being, reading ARTICLES like this one, remind us how lucky we are to have caregivers, every day sticking their neck out for our well-being.

See “John Q”, a very heart-wrenching real-life story made for movie by Director Nick Cassavetes, who experienced PERSONAL & FAMILY real-life dilemma with his daughter’s congenital heart disease.

Sometimes CARE-GIVING can get so desperate, I’ve deep-sympathy when I see caregivers feel cornered & helpless to save their family.

THANKS & CHEERS TO EVERY CAREGIVERS IN THE WORLD, they made & still make our lives better, everyday.

Comment on 12 Epilepsy Travel Tips by Charlie

Charlie — Tue, 29 May 2012 23:06:52 +0000

Back in my ‘bad boy’ days, I dealt with an Airline straight on. I didn’t particulary care what their policy was. I told one particular airline person, snooping in my “Pill Bag”. [You keep jacking with me and I'll have a #%$^&$# Seizure right here! Would that prove to you I need them?] “Now give me my stuff and get me on that plane!”
I’ve mellowed a lot since then, but sometimes Dealing head-on with a situation works. Then again, sometimes it might get you kicked off the plane. ;o)

Comment on A Caregiver’s Guide to Survival… by Charlie

Charlie — Tue, 29 May 2012 22:54:50 +0000

I went right to my wife who was/is my caregiver for advice on this topic. She says the thing that helped her lower stress the most, was, “Planning”. If she was going to be away, she had “Plan B”. One of the things she said that would exasperate and stress her the most was me saying “Dont worry about it, I’ll be OK”